Describe your life prior to diagnosis:
Growing up I never had any dietary issues, I basically ate whatever I wanted. But as I entered into my late 20s and early 30s, I started to notice some changes. I would get random bouts of nausea, headaches and indigestion. I brushed it off and downplayed my symptoms by saying “maybe I just have a sensitive stomach.” However, as time went on my symptoms became more severe and more frequent.
How did you come to know (or suspect) that you have celiac disease?
During the Christmas holiday season of 2019 my symptoms were so intense that I was almost taken to the ER. I was sick for almost two weeks and at that point I knew I had to get answers! I went to a gastroenterologist (a GI doctor) and explained my symptoms and they ran multiple tests.
If you were diagnosed, who made the diagnosis?
After bloodwork and an endoscopy, I was diagnosed with celiac disease by my doctor in February 2020.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
Looking back, it’s clear to me that I went undiagnosed for at least five years. I had been tested for other autoimmune diseases in the years before my celiac disease diagnosis. I was desperate to find out what was going on with my body. My doctor tested me for several other diseases, which all came back negative. I was completely frustrated until I went to a GI doctor.
Once it was confirmed, I began my gluten-free journey, which hasn’t been easy. I’m relieved to finally know what has been making me sick, and I finally have the answers I’ve been looking for. I know what it is and I know how to control it. Following a gluten-free diet is not always easy, but I know it’s necessary and I have the support of my close friends and family.
Do you believe anything could have sped up your diagnosis? If so, please explain:
I had no knowledge of what celiac disease is. It’s not something that people really talk about. I didn’t see any commercials about the disease or the symptoms and didn’t know anyone with that diagnosis. I think if there was more awareness about celiac disease I would’ve tried to get tested sooner.
Describe your experience with living with celiac disease:
I’ve been gluten-free for almost a year and a half now. While my symptoms have significantly improved, I still have moments where I have symptoms from accidentally ingesting something with gluten, but those moments are fewer and fewer.
My husband is extremely supportive and helps me find my gluten-free products when grocery shopping. Eating out is still a task at this point. I have to constantly double-check ingredients and ask questions like, “are the chips made from corn or flour?” At times I feel like I’m a walking billboard for celiac disease because there’s still not a lot of awareness out there. My family and friends have no idea what it is so I have to explain the disease and my symptoms to them. That part is not easy for me. I’ve had people tell me that celiac disease sounds like a made-up disease and that there’s nothing wrong with me. When I bring my own gluten-free food to gatherings with other people, they sometimes stare or make insensitive comments. I am West Indian so celiac disease is not well-known in my community. The lack of knowledge and understanding about celiac disease is extreme and I wish there was more awareness about this disease.
Is there anything else you’d like to add to your story?
I am looking forward to doing what I can and sharing as much as I can about celiac disease. I hope that my story can help others get diagnosed sooner and help my community understand the disease.
